Learn About Callie's Journey with CHD

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Callie was born with an extremly rare, complex congenital heart defect, Hypoplastic Right Heart, Pulmonary Atresia with an Intact Ventricular Septum, MAPCA’s, Pulmonary vein stenosis. Currently she has had 11 heart surgeries,15 heart caths & over 30 blood transfusions.All of her surgeries have been performed at Lucile Packard Children’s Hospital in California by one of the best surgeons in the world, Dr. Frank Hanley.This blog is dedicated to her and her journey as a survivor with Congenital Heart Disease.Her battle is by no means over but we take one day at a time and rejoice in ALL the good times. Please join us in praying for our sweet girl.

Sunday, March 14, 2010

California...Again

I apologize for not updating lately, but I really haven't felt like it. To be 100% honest! Callie is doing okay. Hanging in there, I guess you could say. We will be heading back to California on April 9th. We've only been home just over a month. The first 2 weeks we were home, went great. Then, it was like someone flipped a switch and Callie's breathing got harder, she turned dark blue in her hands and feet again and her oxygen returned to the 60's awake. Exactly, how she was before the trip in January. She is also struggling to gain weight, she has shot up in height and her body can't keep up. Her appetite hasn't been the best latley, either:(

Will and I have been very stressed the past few weeks, just hearing Callie and how loud her breathing is, stresses us out. Being so far away from the one place that gives us hope and is capable of dealing with Callie, is very hard. We wish so much that we lived closer to California. If we are ever able, we will definitely be moving closer or to California. We can't ever get settled, when we haveto pick up a travel back to California every 2 seconds. Just like, we looked into buying a house, to take advantage of first time home buyer credit, etc. But, we soon realized we just aren't able because we never know what is around the corner with Callie, which makes our financial situation to unreliable to make such a commitment as buying a house. Which is fine. All I want, is for Callie to be thriving, happy and healthy. I am very stressed about this upcoming trip because there is a very strong possibilty of open heart surgery. Which I am very scared about. Explaining how I feel, is extremly hard because there is so many emotions that go along with Callie's health, traveling and all the unknowns that lay ahead of us.

Sorry for venting but I am mainly lost for words because I really can't believe what my daughter continues to be faced with. It really is the hardest thing in the world and I would do anything for it NOT to be her! Since, the day Callie entered this world, my prayer has been for the Lord to heal her heart and I will continue to pray that prayer every night to come. That's what I hold onto, that miracle waiting around the corner. In the same prayer, I thank him for blessing Callie with her health and where she is today. Because there are no words that explain, how grateful I am for what the Lord has blessed Callie with because I know there are many children and have seen it first hand, who have a lot more issues (health wise).

Please keep Callie in your prayers, she needs everyone praying for her. As of right now, we leave on April 9th. Fingers crossed, it stays that way. But, if need be, we will leave sooner. It all depends on Miss Callie. Callie also has a donations account at Vystar Credit Union to help out with things. Account #: 702811982 Will continue to update with any changes.

3 comments:

  1. Sweet Sarah-sorry that is the new name I have for you. I always think back to that night when we hung out and I wanted to just give you a hug and let you cry on my shoulder, but I did not want you to think I was too weird. It just broke my heart to hear you speak about what you have been through.
    Before I go on, remember...Venting..a good thing. Let it out! We are all hear to listen and hey is that not what this blog is for! Never keep in your feelings it's good to get them out. I've always told my husband he saves quite a bit of money with my blog. Meaning I let out alot of emotions and for now he does not have to pay for therapy while I write my heart out. :)
    OK...back to how you are all doing. Sorry you will need to head back to CA. I can't imagine how unsettled you feel. I could only imagine how stressful hearing Callie breathing hard must be, so sorry. Sometimes and I have been there many times before...it's hard to see God through all this. It's like if he is just on the sidelines. Because no matter how great your faith, being tested day in and day out is more than anyone can handle. After Gracie passed, at times I felt judged for the feelings I was having. Sounds crazy huh? Someone actually asked, how are you struggling so hard if you have faith. Thank goodness I am a Christian and I kept my thoughts and words to myself. They were in my mind though and I asked for forgivness because they were not nice thoughts toward that person at all. :) happens sometimes. All I am trying to say in all this is that when you can't anymore God can. Go through all your emotions the only way you know how, pray when you have strength, trust in God when you can and leave all the rest to Him. You are human and you will have really bad days especially ones that hurt so much, but always remember God never leaves your side.
    Sometimes, I think that Satan (the enemy) whatever you like to call him, really likes to get in our head and make us feel weak. So for me, I fight him off first, by showing him GOD is GOD and He is good all the time. AND no matter what he will NEVER leave you, even when you can't lean on him he is still holding you up. I'm sure you heard this verse, but wanted to share again:
    Isaiah 41:10
    So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.
    (NIV)
    God is always holding you up even when you are falling fast.
    Callie is your blessing from God and he chose you both as her parents for a special reason! Try and keep your head up, you have had to endure so much, but you will get through it with God by your side.

    Wonder if all this is going to fit.... :)

    Lastly Hopeful Hearts wants to help you out so we can either put money in the account or we can help in any other way. Just send in a note to my hopeful hearts email. terrachez@hopeful-hearts.org.

    I'm too tired to spell check so excuse my writing.. :)

    By the way can Callie get any cuter? I think not! :)

    Big hugs, sweet Sarah.

    Love,
    Terra

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  2. Oh Sarah,
    First off, I am sooo happy to see that you and Terra got to become friends - she was always my "go to" when I needed to talk to someone. Second, praise God that Hopeful Hearts is going to help!
    Third, just know, my friend, that our family is wrapping you all with BIG HUGS and BIG
    PRAYERS. We love you guys, and will be standing by you in this. We are here for you and your precious baby girl.
    Love,
    Victoria

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  3. Sarah,
    I'm so sorry to hear about your quick return to California. We also are coming the end of April. Maybe our paths will cross again. We will pray Miss Callie will hold out until the planned time and not have to go sooner. Hang in there and keep us all posted. When you can't see His hand, trust His heart!! This is a quote I have to remind myself of often.

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